Treatment compliance in retinoblastoma management – An approach to identifying and addressing barriers, and assessing compliance rate

• Though economic constraints remain is a major barrier to retinoblastoma treatment compliance, other socio cultural barriers like reluctance for enucleation contribute to treatment noncompliance in low middle income country like India • Financial aid for treatment, travel and accommodation can mitigate some of the economic barriers. • Awareness and early detection initiatives along with intense counseling will help in addressing other barriers and improve retinoblastoma treatment compliance To identify causes of non-compliance and evaluate effectiveness of interventions in improving retinoblastoma (RB) treatment compliance. Retrospective observational analytical study. The staging and grouping of RB were determined according to International Retinoblastoma Staging System and the International Classification of Intraocular Retinoblastoma respectively. Medical records of RB patients treated at a North Indian tertiary ocular oncology center (July 2019–June 2022) were reviewed. Compliance was defined as adherence to treatment plans and timely follow-ups. Patients in Group 1 (July 2019–Dec 2020, n=60) received standard care, while Group 2 (Jan 2021–June 2022, n=86) additionally received financial, logistic, and counselling support. Compliance and treatment barriers, assessed through parental interviews, were compared. Both the groups had similar demographics. Compliance improved from 67% (Group 1) to 78% (Group 2). Major barriers included financial constraints (69%), refusal of enucleation (27%), family/social issues (14%), cultural beliefs (13%), and COVID-19 restrictions (9%). Additional support led to better treatment compliance, though the improvement was not statistically significant. Non-compliance persisted in 22% of patients, mainly due to advanced disease, reluctance to enucleation, and sociocultural challenges. Sustained improvements in compliance require community awareness, family education, and early detection strategies.